Tuesday, August 11, 2015

Looking for T1D kids who were older when diagnosed.

Is there any teenagers in Canada who were diagnosed with T1D at age 10 to 12 years old age, and who still remembers what their life was like before they were diagnosed??

Did they go through the same grieving process in having to give up that old life, because now they have to prick and poke and watch what they eat and drink every day?

Are there any D-moms out there whose child was diagnosed at age 10 or older and thus have had to deal with a pre-teen or a tween, who is almost into puberty and still dealing with a T1D diagnosis on top of the hormones?

Almost every T1D child I come across (mostly from blogs by D-moms)  was diagnosed at a young age - often before the child started school - which means that they do NOT remember any thing about their early life that did not include Diabetes.

I have been asking Toronto Sick Kids diabetes clinic staff to be put in touch with a D-mom of a child who was diagnosed at an older age and the child is still around my sons age - 13 right now - and therefore who was diagnosed just 3 years ago. Apparently there are no such children. Those children other than my son, who were being diagnosed 3 years ago, were all younger children.

Every child I meet at the clinic, after talking to the mom, was diagnosed when they were younger than 6 to 8 years of age.

No wonder my son is still avoids talking about his diabetes. He doesnt talk to anyone. He hates being forced to inject when he is away from the house. He does prick his finger but very reluctantly and only if he can do it in private.

He has stopped going to friends birthday parties because the party schedule often does not fit into our diabetes schedule.

He no longer does Halloween. What's the point when he cannot eat the candy? He hates that it has to be doled out. So he doesn't bother.

Monday, August 10, 2015

Long time no read

I haven't posted on this blog now for almost 3 years. My son has just passed his 3 year anniversary since he was diagnosed with Type 1 Diabetes and I thought I would do a catch up post.

My son had just turned 10 years old when he was diagnosed in June 2012.

DS (dear son) is now 13 years old and doing very well. Height wise, my son was slightly shorter than me when he was diagnosed with T1D. He was one inch taller then me, his mother, by the time he turned 11 years old. And now at 13, he is now 6 inches taller than me. He TOWERS over me!!!

I use this fact as my proof that I am doing things right by my sons diabetes treatment and management, since he is clearly growing and thriving!!!!!

My husband is 6 feet 1. DS is getting closer to his dad in height every year. I think my son will be 6 feet tall by the time he turns 14 and is ready to start High school in 2016. The doctors fully expect him to stop growing at around 6 feet 4 or taller.

What else. We are still doing MDI's. (multiple daily injections.). I find these give us better control. As for the diabetic maths, well we don't really do any. I still count carbs for all of his meals. If there is any extra insulin to be added, I just guess and add one or two units.

DS has gone on just ONE overnight camp in the last three years - and that was a 3 day school camp. I did enroll him in a 2 week diabetic camp, but he refused to go so he didn't. His main reason for refusal was 1 he would not know anyone else  (true since he is still the only child at his school who currently has T1D) and 2 - he was not sure that he could trust the doctors and nurses at the camp, to keep his numbers under control. His numbers during the 3 day school camp, were pretty good. He even injected himself. He has been injecting himself most of the time, ever since. I still do the recording and management of insulin.

DS's A1C for the first 2 years of being diabetic were all over the place. They included numbers like - 8.1, 7.8, 7.6. 8.5 (that was during summer and he did a lot of "grazing"), 7.9, 8.1, and 8.2.  The last 2 numbers were before and during the summer of 2014. I was getting depressed and angry for having to do everything on my own all the time, DH (dear husband) has no idea what to do with our sons diabetes treatment, and what is worse, he does not want to learn.

I had a chat with the doctors and the social worker around this time. The SW later told me that the average A1C for the Toronto Sick Kids, at that time, (Summer 2014) was 8.5. The fact that most of my sons A1C numbers are BELOW that average, means we were actually doing very well. She even said that some kids were unable to get or keep their A1C numbers below 10. Those numbers actually helped me a lot!!!!

For the last 12 months, DS's A1C numbers have been much better. 7.7, 7.1, 7.1, 7.3 and last month (July 2015) 6.8!!!  This is the first time since diagnosis, that his A1C has been BELOW 7!!!

Actually my DH was a little jealous. DS's A1C is 6.8. DH's last A1C was 6.9!!  LOL

But the fact is, that my DH has been able to keep his A1C under 7 for the last several years, so he really has nothing to be jealous about.

DS will be going into grade 8 in September. He maintains a strong B average at school - (mostly B's, some As and NO C's on his last report card) without really trying. He has always been a smart kid. He has told me that he is bored at elementary school, and I totally know where he is coming from. I too was bored in school. So I have told DS to hang in there for 1 more year and then when he gets to high school, he will have so many more choices. A good part of grade 8 will be spent learning about and making those choices of new subjects and visiting the high school etc. He has already visited this High School once on a Grade 7 trip, which was good.

We have chosen DS's high school with these choices in mind. He will be attending a high school that specialises in Arts, Media and Technology. Unlike other high schools that are just plain academic. Those are boring. The first Open House for this HS will be in October 2015. This is also a small High school with just 700 students. Most High schools in Toronto have 1000 or more students. DS loves his computer games and technology. He has both a PC and a tablet and uses them both every day.

He wants to be either a youtuber - where you can play games online and video them and then have subscribers who pay to watch you play these games, plus sponsors who pay as well. Or he wants to be a video game designer.  Considering just how much and how often he plays games when he is at home - this career would be perfect for him.

DS has a cousin who attended Ryerson University doing a Computer Science Degree. This cousin has done both a bachelors and a Masters degree. We think he is now doing a PhD - because his facebook page says he is employed as a teachers assistant (TA) - but since we no longer keep in touch with the family, we don't know for sure.

As to why we dropped the family contact, that is pretty much due to DS's diabetes as well. From the time DS was a baby we would go up to DH's brothers home for Xmas, New Years and Thanksgiving day, where there would be lots and LOTS of food. That was fine when DS did not have diabetes. But now that we have to control the carbs that DS eats, and there is just no way to measure or count the carbs with all the food that was piled up on the tables, we decided that it was easier to just stop attending. There were other reasons as well, but the diabetes was one of the major reasons.

I think that's enough for now. If I think of anything more, I will post again.


Monday, November 5, 2012

Why people are Afraid of Type 1 Diabetes

I recently posted my thoughts on Why People so Afraid of Diabetes (see tab at the top of this page) and my thoughts included my experience of being on a Diabetes forum and being blasted as being a bad mother because I dont check my sons Blood Glucose (BG) during the night.

It's taken me a few days to think this through, but now I think I have an answer.

Almost all american children are immediately put onto Lantus insulin at diagnosis. Nothing wrong with that, but it means that the child is immediately thrust into the bolusing and carb counting and diabetic maths situation from day 1.

Also Lantus is a long term insulin. It runs for 24 hours. And then extra insulin is added at meal and snack times. This is called Bolusing. That is how the regime is supposed to work.

Lantus is listed in my Diabetes book as Onset is 2 - 4 hours, no peak and lasts 24 to 36 hours.

Many of the mothers on the forum mentioned giving their child a Lantus insulin injection at bedtime. Which means that it sits there inactive for 2 to 4 hours before it starts working. Of course the kid is going to have lows over night.

A better time to inject would be at breakfast time. If it is injected at breakfast time, then it will be active by lunch time and will stay active all evening and overnight. The child is far less likely to have lows. The morning bolus injection will cover the breakfast food eaten.

 As I also stated in my People Afraid of Diabetes page, I also stated that the reason why here in Ontario, we don't use Lantus. This is because we dont want newly diagnosed children being subjected to bolusing right from day 1. So in Ontario, we use intermediate acting insulin - called NPH. But the pronblem is that it is cloudy and for some reasons Americans have been conditioned to stay away from any insulin that is cloudy.

When I mentioned that I was using NPH (the intermediate insulin - the cloudy stuff), I was told, you need to get onto Lantus ASAP. Well, no I dont. In Ontario, kids dont go onto Lantus until they can inject themselves and until they can do carb counting and diabetic maths. And even then, the lantus is usually provided by the pump.  Children with Diabetes (CWD) have to keep their A1C's under 10 for 3 Endo visits in a row, in order to qualify for the pump.

Right now my sons shows no interest in injecting himself. Because I do it all for him. He is only 10 years old. So he won't be going onto a pump if he doesn't start taking care of himself. However, it is early days yet. Hopefully by the time he is 12 and 13 years old, he will be injecting himself.

Monday, October 1, 2012

Numbers going haywire....

Is this the end of the honeymoon period?

My son has had a bad cold and cough for the last 10 days - his BG numbers dropped for several days before going back to normal and then the cough started so I kept him home for the week while he coughed and generally acted sick. I did get some assignments from the teacher so that means he wont be too far behind.

But this weekend just ended, his BG numbers shot up high and stayed high. The book says that if the numbers stayed high for 3 days in a row, then to increase the insulin. It's only been 2 days but since it is across the board, then I will be increasing the NPH after just 2 days.

Am keeping the breakfast Rapide the same for now since the lunch time number is generally on target. And I increased the NPH, since the dinner and supper numbers have definitely increased so they need to be brought back under control.

Called the diabetes nurse this morning and explained what I was doing. She says I did the right thing.

Wednesday, September 5, 2012

Back to School

My son went back to school yesterday. September 4th. And it was HORRIBLE.


My first trip to the school was at 10 am so I could drop off 2 lots of juice boxes as his emergency stash. He needs to have 2 lots - one for the main school building and one for the annex where his classroom is.

I got the first phone call at lunch time. Did I forget to pack something in his bag? Yep - I forgot to pack his  blood glucose meter.  That was really silly, so I walked down to the school in the rain on my second trip of the day to poke his finger - only to discover that I had left the test strips at home. So I couldn't poke his finger. I just told him to have lunch and not to worry about the lunch time number.

At 2.30 pm I got another phone call. He had just had Gym class and was feeling shaky and again he had no blood glucose meter (I took it home with me after lunch). So back to school I went in the rain for the 3rd time - to poke his finger and give him permission to have a juice box. This time I remembered the test strips so we got a number. He said he was shaky but the number was not below 4. It was actually above 5 mmol/L - most unusual. But since he had just had a gym class, I allowed him to have a juice box.

He managed the rest of the day just fine.

Since the school board and therefore the school, do not currently have a Diabetes plicy, the school principal charged me with writing up a list of things I would like to see happen concerning my son's Diabetes, during the school day. This means I get to have some say in school policy.

Now, under Ontario teachers union rules, school teachers cannot inject Insulin or Glycogon, so neither of those will be part of the policy. Mostly I just to ensure that my son is allowed to eat his snacks when he is supposed to, in order to keep his sugar levels steady. He gets all his insulin shots at home before and after school.

Thursday, August 30, 2012

1st Post Diagnosis Clinic

Today my son and I went off to the Toronto Sick Kids Hospital for the first post diagnosis Clinic. These are usually held every 3 months, but this one was scheduled for August 30, so that he would be seen at the end of summer before school starts again.

We were in and out early. Got to the hospital at 0815, got the blood work done, was at the clinic by 0830, seen by the doctor before 9 AM and then by the diabetes nurse at 0930 and were on our way home by 10. We had left home at 0730 and we were back home by 1030. 

Just for the Record.
Today is Thursday August 30, 2012.
School starts next week on Tuesday September 4, 2012

I had 2 things I needed to find out for sure. One was the H1AC and the other was the anti-bodies issue. Does he or does he not have antibodies?

OK well about the antibodies issue. There were 2 antibodies tests done and one of them was positive and the other was negative. BUT, the doctor said that if you combine the positive antibodies test with the low level of insulin production he was measured at, then they are fairly sure that yes he has Type 1 Diabetes. The level of insulin, his body is producing is low enough to be normal for Type 1 Diabetes, and not high enough to be "normal" for Type 2.

Now the H1AC number. Back in mid June when my son was diagnosed, his H1AC was 13%.
I am very please to announce that today - just 2 and a half months after diagnosis - his H1AC is now 8.1%.
The doctor and the diabetes nurse were extremely impressed!!!!  They said this was an excellent result.

Hopefully in another 3 months, his H1AC will be down to 7%, and if we are very good, it may even be down to 6 point something.

Next Appointment is set for mid December - exactly 6 months after diagnosis.

Saturday, August 4, 2012

The A1C

What is the A1C test?

The A1C test is the best way to measure how controlled someone's diabetes is. It measures an average of Glygated Hemoglobin in the blood. Glygated Hemoglobin is the product after hemoglobin in the blood has combined with glucose. Since on average, blood cells last for 3 months, this gives an average level of glucose in the blood over the previous 3 months. It is now regarded as an excellent means of measure diabetes control.

My sons A1C in June was 13%. This is very high. It means that the average amount of blood sugar over the previous 3 months was 18 mmol/L.

In early March his blood sugar was measured at 5 mmol/L. (I saw that in his file - the doctor showed me).
And when he was diagnosed with type 1 diabetes less than 3 months later, his blood sugar was 25mmol/L.

In a non diabetic person, the normal blood sugar level would be between 4 and 6 mmol/L  The A1C would be around 5 to 6%.

In a diabetic with their blood sugar under control, the aim is to get your A1C down to 7%.

Last week, my husband (who has Type 2 diabetes but is also on insulin) told me that his A1C was 6% - which means he is keeping his diabetes under very good control.

My sons first post-diagnosis clinic is set for August 30, so we will get a new A1C number at that time. I hope it will it will be at least below 10%.  But if it's not then I will just have to try harder to keep my sons diabetes and blood sugar levels under better control.